Reforming the Privacy Act to better support health research

The Attorney General’s Department is undertaking a multi stage review of the Privacy Act 1988. In February 2023 the Department published the Report of the Review of the Privacy Act and of the consultation undertaken in 2021 and 2022. The Report contains many proposals for amendment of the Act, a few of which have direct implications for the use of personal information in research, and consent to the use of information for research purposes. Research Australia responded to these privacy related matters, supporting a broder research consent, and further consultation on the exceptions from consent which permit research to be undertaken.

Research Australia’s submission is available here.

The Government’s response to the report was released on September 2023 and is available here. The Government has accepted the report’s recommendations relating to research and will consult further before developing legislation. Research Australia will continue to participate with further consultations as legislation is developed.

Making better use of GP Data and enhancing GP decision making

Most GPs these days use a practice management system (PMS), software which helps capture and manage patient information. Many of these systems also use AI enabled Clinical Decision Support (eCDS) software to support clinical decision making by suggesting possible diagnoses and treatments.

The Australian Government is investigating options for making greater use of data held in PMSs, and also the options for oversight of the quality of eCDS.  Research Australia’s submission has provided examples of the types of research outcomes that can be achieved with GP data, and suggested how research could support the validation of eCDS and confidence in its effectiveness.

Research Australia’s submission is available here.

Making better use of Health Identifiers for research

The Health Identifiers Review is being conducted by the Department of Health, with the objective of increasing the usage of Health Identifiers in the health system. Research Australia is seeking an amendment to the Health Identifiers Act to explicitly permit Health Identifiers to be used when preparing datasets for research purposes.

Research Australia’s response to the consultation is available here.

Research Australia urges Senate to support the National Reconstruction Fund

Research Australia has used its submission to the Senate Economics Legislation Committee Inquiry into the National Reconstruction Fund Bill to urge the Committee to recommend the passage of the Bill, subject to two amendments proposed by Research Australia.

Research Australia believes the National Reconstruction Fund provides the opportunity to better leverage Australia’s world leading health and medical research and create a vibrant and successful medical products industry which propels Australia forward to become a net exporter of medical products.

Doing so would provide significant benefits for Australians with more secure access to medical products, better health outcomes and the creation of well-paying jobs and new businesses in a sector that has enormous scope for ongoing global growth.

The proposed amendments are:

    • require the Ministers to report to the Parliament on how the NRF has complemented other measures by the Government to support research, innovation and manufacturing. (Clause 91)
    • require the quarterly investment reports to identify recipients of financial accommodation by name and to specify the priority area to which the financial accommodation relates. (Clause 82)

Research Australia’s submission is available here.

Research Australia responds to NRF Implementation

Research Australia believes the National Reconstruction Fund (NRF) has a vital role to play in creating a mature and vibrant domestic medical products industry as a cornerstone of a post-carbon Australian economy.

We have made four recommendations in response to the consultation on the implementation of the NRF:

    1. The Ministers should obtain the advice of a future Centre for Disease Control about medical products for which there is a critical unmet need for domestic manufacturing. This should be a consideration in how funds are subsequently allocated by the NRF, although not to the exclusion of the need to generate a return on the investment.
    2. Development of the investment mandate for the priority area of medical products should include identification of areas with the potential for profitable domestic manufacturing. This should be a consideration in how funds are subsequently allocated by the NRF, although not to the exclusion of the need to generate a return on the investment.
    3. The Australian Government should create a National Medical Products Industry Plan to accompany the introduction of the National Reconstruction Fund to make the most of all the Government’s investments throughout the health and medical research and development pipeline.
    4. The Australian Government should develop a medical products research, development and manufacturing workforce plan to determine where the gaps in existing skills are and to address them.

Research Australia’s submission addresses most of the questions posed in the consultation paper. The submission is available here

 

Dementia Action Plan needs new funding for research

The Australian Government’s draft Dementia Action Plan has recognised the importance of more research to improving the lives of those living with dementia, their family and carers but has not proposed any actions that will lead to more research being funded.

Research Australia’s submission has addressed this shortfall, and proposed the draft Dementia Research Strategy draw on the work undertaken by the now defunct NHMRC National Institute for Dementia Research. We have also recommended the proposed Australian Dementia Research Strategy be an ‘Australian Dementia Research, Innovation and Implementation Strategy’ to better meet the Action Plan’s objective of maximising the impact of research and innovation. Accountability for implementation of research outcomes and the funding of this activity needs to be clearly assigned by the Action Plan and the Strategy.

Research Australia’s submission is available here.

Pre Budget submission calls for strategic investment

Research Australia’s Pre-Budget submission to the Treasurer acknowledges the progress made since the election. This includes putting Australian innovation and industry on a stronger footing by introducing the legislation to create the National Reconstruction Fund and Australia’s Economic Accelerator (first proposed by the previous Government). These measures are recognition the Government shares Research Australia’s view that it is no longer good enough to just sell off our best ideas to the rest of the world.

Australia has world leading health and medical research but current investment is inadequate, poorly aligned and failing to deliver on the potential health and economic benefits. In summary, Research Australia has recommended:

    • A National Medical Products Industry Plan with the aim of Australia becoming a net exporter. This can capitalise on the Government’s commitment to the National Reconstruction Fund, and help secure Australia’s national security, by manufacturing more of the products we rely on here in Australia.
    •  A National Health and Medical Research and Innovation Workforce Plan to ensure we have the workforce we need for the future.
    • A national stocktake of health and medical research and development activity across Australia
    • A new Clinician Researcher Fellowship Scheme to help drive innovation efficiency and improved equity in our health system
    • Increased investment in research and development, especially through the funding programs of The National Health and Medical Research Council and the Australian Research Council.

Read Research Australia’s submission.

Improving the ARC Act

On 30 August 2022, the Minister for Education, announced an independent review of the ARC Act to consider the role and purpose of the ARC within the Australian research system so it can meet current and future needs and maintain the trust of the research sector.

The Expert Panel appointed to undertake the Review issued a consultation paper which included specific questions respondents were asked to address.

Research funding from the Australian Research Council (ARC) is relevant to Research Australia’s membership because, while the ARC does not fund ‘medical research’, the ARC funds much of the basic research that underpins health and medical research, as well as supporting the broader research ecosystem.

Research Australia’s responses were directed to specific questions relevant to our membership.

Research Australia’s submission is available here.

The role for research in a new Centre for Disease Control

In November 2022, The Commonwealth Department of Health commenced a targeted consultation on the proposal to develop an Australian Centre for Disease Control (CDC). Research Australia participated in a consultation workshop on 24 November  and was invited to make a submission in response to a consultation paper.

Most of the CDC’s functions will relate to provision of healthcare and prevention measures. Research Australia’s responses were directed towards areas where health and medical research and innovation is most relevant to the CDC and can provide the most support for its proposed functions. Key points include the:

    • CDC’s role in data collection and analysis and the value of providing access to these datasets to researchers;
    • need to include reagents in the National Medicines Stockpile;
    • scope for the CDC to identify essential medical items which should be manufactured domestically; and
    • publication of all CDC recommendations and reports as a measure to enhance transparency and public confidence.

Research to support Health Literacy

In October 2022, The Commonwealth Department of Health released a draft National Health Literacy Strategy for consultation. The new Health Literacy strategy is being developed under the National Preventive Health Strategy 2021-2030. As such the Literacy Strategy is intended to provide the public with the skills and abilities to maintain their own health and wellbeing as well as improve interactions with the health system.

Research Australia’s submission to the consultation emphasised the role research can play in supporting the implementation of the Strategy, and the need to recognise older Australians as a priority target population.

Research Australia’s submission is available here.